May 07, 2013

Never ending!

This blog post is loonnnngg over due!!!! So much has happened in the last two months its never ending stress.

only thing that would make her happy

March 13th Hailey started getting sick, she had a really bad fever for 3 days before we took her to the walk in. We were pretty sure by this point it was an ear infection because she kept grabbing her one ear and had orange ear discharge on her pillow. The first doctor looked in her ears and said not an ear infection, listened to her chest said it sounds clear. He said she must just have a bug and sent us home. The fever continued for 2 more days, so we brought her into a different walk in. This doctor checked her ear said she had an ear infection and a sinus infection listened to her check and said she sounds like she has asthma. So she wrote us up a prescription for amoxicillin and puffers. Hailey didn't really have a cough untill she started the puffers, its like it loosened something up and she started coughing like crazy. 3 days after that(March 20th) Hailey STILL had a fever and now she had eye discharge!!! So I took her to emergency this time since it had been 9 days now with a fever. They checked her ear said it looked red they weren't sure it was an infection. They did a chest x-ray and saw a spot on her lungs behind her heart and thought it was pneumonia so we kept giving her antibiotics and weren't seeming a complete improvement.

On the same day I brought Hailey into emerg I sent Victoria general a video I took of Hannah coughing. Hannah started coughing alot more over the last few months when she was off her vent, not a normal cough but a high pitched one that sounded like her air was was closing and I was starting to get more concerned. They were pretty sure that it was a granuloma in her air way and she would need to come in to have it surgically removed. They told us to plan to come to the hospital April 1st to have it removed and that she would get tubes put in her ears at the same time.

On march 23/24 nurse and I decided to bring Hannah into emerg at midnight because her heart beat was irregular and we were having a hard time keeping her O2 stats above 85. The took an xray at the local hospital and it showed that her lung was very collapsed/had some blockages. Since we had brought her into the hospital she started to have an increased work of breathing and wasn't looking good. They flew us by helicopter from the local hospital to Victoria general.... but not untill 8am the next day!!!! It was terrible, they didn't tell us it was going to be that long so I didn't try to sleep. I thought going to sleep would only make it worse when they did show up..
When Hannah got to the hospital the did some test and found that she had a bacteria in her trach growing called Moraxella Catarrhalis. Which can cause infections to; respiratory system, middle ear, eye, central nervous system and joints of humans! sounds an offal lot like what Hailey has, and its resistant to certain medications ei; amoxicillin. So I called the person Hailey was with(since we were in Victoria and told her to get Hailey on a different antibiotic. The doctors told us that Hannah would go into the OR for surgery on April 4th because at that moment she was on 3-5 liters of oxygen and wasn't stable. We missed easter, Hailey wasn't with us but we made the best of it. Last year it was just me and Hailey so I guess its fair in that way.. but it still really sucked.
During our wait in the hospital for April 4th to roll around I noticed Hannah had been on antibiotics for a few days now and was looking sicker not better. So a day or two later the staff at the hospital finally believed me and ran test. She caught Influenza B from the hospital!!!!!! So by the time April 4th rolled around Hannah was still not stable enough for surgery so I said WERE GOING HOME! It had already been 2 weeks and if we stayed it could be 1-2 more weeks.

We went home on a Thursday and they told us we would be going into the OR by Tuesday Wednesday and they would call us the next day. I was super paranoid about Hannah getting sick again and really stressed waiting to go back to the hospital. It felt like my life was on hold so every day they didn't call to tell me when we were going back I would get more and more frustrated Finally Tuesday morning(the day they said we would be going back) they told us that we wouldn't be going into the OR until April 19!!! Not only was that one more week of waiting that was also the day before I was planning the girls 2nd birthday... The first party or shower they would have had, since we didn't have a baby shower or a real first birthday because Hannah was in the hospital.
A few days before the girls birthday I noticed Hannah's trach secretion were still thick, yellow and green, which was odd since I had Hannah on the humidifier 24/7 (which is stressful when she's as active as she is)to make she her lungs were good and healthy for the surgery. So I dropped off a sample to the hospital just to make she we didn't show up for the surgery and get shut down again because she was sick.
Hannah's pediatrican call on the day of their birthday(April 16th) to tell me that she was growing a bacteria in her trach and needed antibiotic... Seriously two bactrias back to back and she's never had them growing in her trach before. Victoria's doctors said it was fine and surgery was still on... THANK GOD! Finally April 19th surgery day was here! Really looking forward to life going back to normal. Surgery went great, she had a large granuloma above her trach. The hospital stay was nice and short really excited to go home/ The weather was a mazing, life was good.We get home(April 21) and I take Hannah out for a walk(since it was so nice) before we pick up Hailey. Then me and Hannah drove to go pick up Hailey. I left Hannah in the van with the door open while I went to grab Hailey. I had already texted LC to tell her I was coming, would be in and out. When I got to LC's door I couldn't see anyone and no one was coming to my knocks. So I rang the door bell as one of their friends ran out from the back yard to my van. LC's husband opened the door and told me that something was wrong with Hailey, they think she was having an allergic reaction to something and they've called an ambulance. I immediately ran to the deck and saw LC on the phone with Hailey LIMP on her lap.. I listened to what LC was saying "Ya she's breathing now.." . Hailey's eyes were hardly open and they were just floating around not focusing on anything. LC then told me they don't know what happened the 911 operator thinks its a seizure but they weren't sure. Well I was, Hailey has sever brain damage and we were already told to watch for seizure.. it was no coincidence. LC told me the ambulance would be there any minute and I then I realized Hannah was in the van. I ran back to the van and sped to my moms so I could leave Hannah with her and be with Hailey at the hospital. By the time I got back to LC's the ambulance had already come, so I ran back to my car and sped to the hospital. By the time I got their they were sitting in the admitting chair taking her information down. Hailey was a little more alert by this point but still not Hailey. She kept looking at everyone but only for a second. She didn't recognize me and she couldn't hold her self up in sitting position. Hailey had been at the Air show that after noon, LC said she was acting normal except for her falling asleep on her lap at the air show which isn't like Hailey. They got home from the Air show and within 10 minutes the seizure happened. She went limp, eyes rolled back, drooling, sucking her lips, white and she stopped breathing for a second and turned blue. The seizure its self only lasted a minute but it took her almost 45 mins to recognize who I was and 4-5 hours to act like her self. There was no pediatrican on call at the hospital this day and the doctor that was on didn't know anything about seizures. He did an xray ,drew blood and checked her ears. Her ear was red so her prescribed antibiotics, their was still a spot on her lung behind her heart he wasn't sure if it was pneumonia but said the antibiotics would treat it if it was and the blood work came back fine so "what ever" happen it wasn't bacterial. We had a pediatrican appointment(April 23th), she said the x-ray showed blockages/collapsed parts, not to serious but she would need to be on more puffers. She was pretty sure it was a seizure with Haileys medical history so she would send a referral to the neurologist in Victoria and she would have and EEG done. April 28th five days after Hannah was last in the hospital and Hailey had her seizure, I acidently ripped out Hannah's J-tube so we had to go back to Victoria hospital.
May 2nd I noticed Hannah's ear had what I thought was dried blood. I called the pediatricans office to ask if it was normal and they told me to call the ENT who put the tubes in her ears. I called their office and after a few hours waiting for them to call back they told me that I had to make an appointment with her pediatrican to have her ears looked at because they couldnt diagnose her over the phone. By this time it was already mid after noon and the pediatrican couldn't fit her in so they booked an appointment for her the next day. An hour after that Hannahs ear started bleeding wayyy more so I decided id rather be safe then sorry and took her into emerg. I didn't want her to end up going deaf in one ear or something. The tubes were in the right place her ear was just really infected, so she started another round of antibiotics. Yesterday May 6th LC Had Hailey over night and noticed she was acting very strange in the morning. Just like how she was after her seizure; lethargic, pale, dazed eyes, drooling way more then normal, not talkative. After her first seizure I looked up night seizures and I really think she has them. She doesn't convulse so there's no way to really tell but kids usually wake up after really scared. Hailey use to sleep through the night and now she'll wake up screaming and maybe that's just a normal kid thing but you never know! I also read that signs of a seizure(because a seizure could just be a blank stair unresponsive to sound or touch)being clumsiness or walking funny after. Two 3 weeks ago out of the blue she started to walk funny.. I thought it was just me but then gingy pointed it out to. Today 3 weeks after Haileys seizure and referral to the neurologist the neurologist office calls. They want to see us on Thursday, as in 2 days from now! Thankfully my nurse on Thursday was able to switch her shift to what my mom works that day so my mom can watch Hannah in the morning and then the nurse will watch her that evening when she works. We need to be at Victoria general at 12:45 for an EEG then at 4 we have to be at the neurologists office in Sanich. Hailey needs to be sleep deprived so we have to go to Victoria tomorrow so she doesn't sleep on the 3 hours drive to victoria the day of the appointment. 7 Days home this time, but im really looking forward to having answers for Hailey.